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mtag
mtag Member Posts: 18 Listener
edited October 2020 in Cerebral palsy
Hi all hope everyone is well

i feel so stupid posting this but here goes.

ive always had problems with muscle stiffness and fatigue especially in my legs.

i had 2 operations when I was younger on my achillies tendon to help release the strain and help me walk better or they would of snapped.

as I’ve gotten older walking has become difficult and painful so I went to see a consultant who recommended more surgery 1st one didn’t do much and caused more complications so had another one done as they said a “tidy” up operation but I’m worse off than I’ve ever been , he’s pretty much said I’ll have good days and bad days but I don’t seem to have any good days , he discharged me and left it at that . After speaking to my parents they decided to tell me I was diagnosed with mild cp when I was younger and that’s why I had the operations when I was a child but on reaching 16 they discharged me from the children’s hospital and left it at that.

i just thought my legs were problematic and that’s how it was and didn’t realise that it was due to cp. I got back in touch with the consultant to say I was diagnosed with cp when I was younger to see if there’s anything different he would have done or do like a follow up care plan physio etc or maybe pull my old medical but all he said everything he has seen is consistent with cp and doesn’t need to look at the old files.

i feel stupid as years later I find out I was diagnosed with it and have no idea about it or what type of treatment and care plan if any is needed ? Should there be regular follow ups etc or is it pretty much get on with it ?


Comments

  • Richard_Scope
    Richard_Scope Posts: 3,176 Scope online community team
    Hi @mtag
    Good to talk with you. Sadly, your story isn't rare I have worked with dozens of people whose families, for whatever reason, kept the CP diagnosis from their child. This can obviously present problems in later life as the child, now an adult is starting from scratch.

    You are not alone feeling like this. Ageing with CP is a new challenge for sure. I have quadriplegic CP and you a wheelchair and since I hit 40, I have felt the changes in my mobility and energy levels.  
    As has been mentioned us CP folk use up a lot more energy than non-CP people, up to 5 times more because of the way we move or walk etc, this can lead to fatigue. Don't forget as well that being a parent is also exhausting at times, it is for me and many others here on the community. You most certainly aren't lazy!! 
     
    The key is learning about your body and planning your day around that as much as you can. Plan the bigger tasks at the time you have most energy etc. I would contact the DWP because they way your impairment affects your day-to-day has changed. Whilst the neurological aspect of CP doesn't change, the physical aspect certainly does. There is also something called Post-Impairment Syndrome that is related to CP this refers to additional conditions that might be acquired by someone already living with CP. Here is an excellent blog post about it: 
    What Post-Impairment Syndrome Means to Me 
    What I would advise is that you book an appointment with you your G.P. (telephone appointments will work too) and talk to them about your tiredness because it may not be your CP and it's important to be healthy in all aspects of our lives. You can also talk about how your CP has changed. And getting a referral to a neurologist or neuro-physiotherapist. You can mention the Adult CP Care Pathway created by NICE (National Institute of Clinical Excellence) which instructs G.P.s how and when to refer. 
     
    I'm pretty much always around if you would like to talk further. We're are here to support one another. Don't feel alone.
    Scope
    Specialist Information Officer and Cerebral Palsy Programme Lead

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  • janer1967
    janer1967 Member Posts: 16,410 Disability Gamechanger
    Hi @mtag

    I am glad you have been in touch with Richard and hope the information he has given has been of some help for you

    It is a shame you have been kept in the dark about your diagnosis but I would have thought your medical records had been seen by the consultants and your condition taken into account in their treatments

    Good luck for the future and hope you get along well
  • Chloe_Scope
    Chloe_Scope Scope Posts: 10,545 Disability Gamechanger
    Hi @mtag, just wanted to come and say hi! You certainly are not alone. :)
    Scope

  • mtag
    mtag Member Posts: 18 Listener
    Thanks all for the replies . Some records aren’t on the database as it’s old files from before I was 16 and different districts had their own databases back then but hey ho plod on 

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